Catalonian Fundraiser Inspired By Lluc

Jul 31, 2016 |

Jordi, Dani, Lluís and Gerard arranged “a minority race for a rare disease” which took place on Saturday 16th July in Catalonia, Spain. It was a minority race as, given the unique setting and the space available, there were only ten runners. The organisers auctioned the places for the run and had a fantastic response.
Jordi was inspired to organise the event because his friend’s nephew, Lluc, has myotubular myopathy. Jordi had previously supported a fundraiser that Lluc’s dad organised and then wanted to do more to help raise further research funds.
After the event, Jordi told us, “It seems everybody found it was a brilliant idea to make such a special race. Some of them found it interesting, others just crazy, but everybody loved every single minute they spend there. You could feel the magic of the moment and the strength and determination to fight myotubular myopathy.

The race started at 8:00 in the morning. It’s quite an unusual time, but here in Catalonia it’s really hot in summer and so we wanted to avoid the hottest central hours of the day. It took 1 hour 33 minutes for the first runner to end, and the last one, 2 hours and 20 something. But everybody knew it was not that important how good or bad they did during the race.

The runners had to climb 100 times that little hill called La Fita Alta. Each time they did so, they climbed 14,4 positive metres (that means that there’s a difference between the bottom and the top of the hill of 14,4 metres) in a loop of 95 metres. So by the end of the race, every runner had climbed 1440 positive metres and 9,5km.

We wanted the runners to climb La Fita Alta 100 times because it’s somehow a representation of having a disease like myotubular myopathy: you have not even a single moment of calm and rest, you’re always struggling for life.

What it shocked me the most was the factthat runners spent most of the time laughing and, apparently, having fun. It was a hot as hell morning, but it seemed they enjoyed every time we splashed water to them. They stopped every now and then to drink water (even beer!) or to eat watermelon and bananas, and everybody cheered them like they were pros.

And then Lluc and his parents came! 🙂 It was a great surprise and a big shock. Roger, Àlex’s brother, was there from the very beginning of the morning and told me his brother wanted to come but it took us by surprise when we saw their car arriving. They are all so lovely! And they were so thankful! It really made our day! It was a nice morning, but that visit took it to the next level.

When the last runner finished, Àlex and Glòria (Lluc’s parents) talked for us and the rest of the audience and it was a really, really emotive moment. They brought tears to our eyes, and filled our hearts of hope and determination. It was a unique moment. We’ll never forget.”

Lluc’s dad, Àlex, spoke to us about the event and said, “We’ll remember last Saturday the rest of our lives. It was amazing. See all these people doing that hard run and, at the end, break in tears of sadness for the serious disease like myotubular myopathy and tears of joy because they are helping us…. wow! All these people have a great, great, great heart! We are full of gratitude to them and to their work.”

And we, at Myotubular Trust, extend our heartfelt thanks to all involved for arranging and supporting this unique and challenging event. We are truly grateful to you all and congratulate the runners on completing the run. Thank you all!

To view more photos of ‘the Minority Race for a rare disease’ please visit –

Great news&period; £117&period;22 was raised for Myotubular Trust during the final quarter of 2018&comma; from purchases made via easyfundraising&period;org&period;uk at https&colon;&sol;&sol;www&period;easyfundraising&period;org&period;uk&sol;causes&sol;themyotubulartrust&sol;&period; Funds raised now stand at £1&comma;296&period;86&period; &num;centronuclear &num;centronclearmyopathy &num;myotubular &num;myotubularmyopathy &num;ThanksAMillion

Calling all runners...join the Myotubular Trust team in this year's London 10K on 21st July. Let us know if you'd like one of our debenture places - contact@myotubulartrust.org The run is open to all – from elite runners to beginners – you will definitely have a great day out! ... See MoreSee Less

Massive thanks to Phil and Craig who, inspired by little Robin, are taking on the 100km London to Brighton Ultra Challenge to raise research funds for Myotubular Trust. We wish them every success with their training and the event itself, and if you fancy taking on this mighty challenge yourself, it’s not too late to register… ... See MoreSee Less

The registration for the Family Conference organized by the Association ZNM - zusammen stark e&period; V&period; &lpar;CNM - Together Strong from Germany&rpar; is now open&excl; Please register until 31&period;03&period;2019&excl; We are happy to see you in Hohenroda&comma; Germany from May&comma; 10th-12th&comma; 2019&period; Please be aware that the language of the conference is German&excl; &num;TogetherStrong http&colon;&sol;&sol;www&period;znm-zusammenstark&period;org&sol;de&sol;2019-hohenroda&sol;

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